DecodeME - UK ME/CFS DNA study underway

Okay, I understand the nature of the problem then.

I'm sure that some clever mathematicians or computer scientists have some idea of how to search for combinations of variants that confer high risk of illness.

Computer science is very interested in search problems, which this is.

 

You may be right.I think the problem may be the statistics. The number of gene variants is very high, so probabilities of links being real have to be adjusted down. The number of gene variant combinations is far higher and may make the problem intractable. That said, if you know that certain combinations are likely to be of interest you may be able to reduce the problem.

 

When this happens is the relevant illness frequency the same in both twins? Or is there the possibility of environmental factors, for those who live in significanly different circumstances.

 

I believe there is a general assumption that both types twin tend to share environmental factors to an equal extent. So environmental discordance will have an effect but if concordance is more common for monozygotic that must be genetic.

I have to say that I think this is debatable. Monozygotic twins may be more likely to end up with closely matched environmental factors.

 

"a longer feature on M.E. and also a number of articles The Times are running this week on M.E. /CFS."

Okay, now I believe that non-subscribers are entitled to a couple of articles each week, if logged in, so this suggests we wouldn't be able to read them all this week. Anyone want to summarise so we can see which are most worth reading?

That aside, if someone has an actual subscription to the paper, it would be very useful if they could post "Shared" links (they contain the words "Sharetoken"), which would enable the rest of us to read them for, I think, 7 days. Just sayin'

 

A quick note from me to say thank you to all of you who have shared this exciting news far and wide so far, the reception and reaction from the patient community surpassed what I'd hoped for and made all the hard work leading up to it worthwhile.

 

Is there a way to see how many pwME have signed up so far?

 

Not publicly, but naturally we are monitoring it, and it's looking positive.

 

More stories in The Times today (which Andy is posting on other threads).

Whenever a story allow comments, we should be posting the link to the DecodeME website and inviting patients and supporters to sign up. The same for every story about ME/CFS in the media from now on!

Can anyone post on that Times article?

 

Shout out to the members of the CFS sub-reddit for supporting the study with two threads.

Code:

https://www.reddit.com/r/cfs/comments/he8dxg/uk_to_launch_worlds_largest_genetic_study_into/

Code:

https://www.reddit.com/r/cfs/comments/hea7cx/new_genetic_study_for_mecfs_everyone_can_sign_up/

 

I shared it on fb and also sent a few texts yesterday to (Non ME) people One of the people is someone who lives away from London now but when I told her she said “Finally soon you can have an alternative to being gaslit by the NHS!”. I hope that’s true!

 

Wessely: no tweets about DecodeME
Sharpe: no tweets either
Henrik Vogt: no tweets either

Do they practice a biopsychosocial approach that pays attention to all important factors, or do they preach a biopsychosocial approach while practizing psychosomatic reductionism?

Not sure who else of the BPS people is active on Twitter.

 

Yes I noticed this too. For people who are apparently so dedicated to the welfare of and helping people with ME...they seem to be remarkably silent about the biggest ME research project ever to have happened...

 

Catching up with some social media posts from yesterday.

https://twitter.com/user/status/1275436005911261185


https://twitter.com/user/status/1275350912207400961

 

The CFS/ME Research account has somehow missed the big news as well. I'm sure once they spot it they'll be more than happy to promote the study.

 

"The new @decodeMEstudy is the world’s largest genetic study into ME/CFS."

Given this UK-based ME/CFS study is going to be the largest scientific study of its kind in the world, you would think that makes it highly newsworthy in the UK scientific press, wouldn't you. I think the SMC should ponder that sometimes it is what you do not say that reveals to others most about your motives. I wonder how they would answer to genuine scientists why they have made no mention of this. I think it is good, because it is incredibly revealing.

 

Glad this is finally off the ground!

A quick question, will participants be able to access a set of their own genome data? This (at least in my opinion) would provide a strong incentive to be a part of the study.

 

After feedback, the following text has been added to the website, directly above the sign-up form.